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P.O. BOX 17679


NW4 1WS:

Email: Committee@fd-uk.org

UK registered charity number 285399

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The following information has been taken from the "FAMILIAL DYSAUTONOMIA" A manual of Comprehensive Care Fith Edition 2009


Prepared by The Dysautonomia Center

In conjunction with The Dysautonomia Foundation



There is no one diet appropriate fo all children with FD, as they vary iin their abilities to eat and their tolorances to particular foods. Some observations have been made, hoever, in regard to nutritional needs, particular preferences, feeding techniques, common irritants and foods that are hard to swallow or digest.


Nutritional Goals


A well balanced diet is the goal for anyone regardless of age.

A child with FD has problems with swallowing, chewing and decreased taste sensation that call all interfere with nutritional intake. There is a tendency to avoid liquids, stay with soft foods and to develope food fads, ie picl on particular favorite and want nothing else for a stretch of time.

Parents should follow nutritional guidelines essential for growth and health. In some cases dietary suppliments may be required to mee nutritional goals (See Table 1 below)





















1 Calories

Children with FD have high metabolic rates. That means that they require the standard calories recommendations. The caroic need for FD patients can be estimatedas 50 calories per pound of body weight (or 23 calories per kilogram of body weight), until the child reaches 50 lbs (23kg); then the caloric requirement decreases to 35 calories per pound (16 calories per kilogram)


A 20lb (9kg) child needs a minimum of 1000 caolries each day.


An 80lb (36kg) adolescent requires 2800 calories a day as a minimum


2. Fluid

A child with FD has unusually high fluid losses because of the tendancy to drool and or sweat profusely.

Therefore, FD patients have extrordinary high fluid requiremetns. Adewquate hydration is paramount for normal body functions. Signs of thirst in an infant include tounge darker (concentrated) with a stronger small or the child may be constipated. Acute profound dehydration may have deleterious effects on the kidneys. Giving adequate aamounts of fluid is vital throughout an FD childs lfe.


Minimal daily fluid intake is calculated at 60cc (or 2 ounces) per pound (or 0.5kg) of body weight for the child up to 20 pound (9Kg), and 20cc (or 1 ounce) per pound (or 0.5kg) for larger individuals.


If a child is unable to consume enought calories or fluid by mouth because of swallowing difficulties, an alternative intake route must be found. Tube feeding mey be necessary to provide a growing childwith adequate nutrition and fluid intake.